Why we need LLMDs (not infectious disease docs)

[Sonsie]

This reprint that starts below and is continued in two more posts (due to length) is a good primer for your uniformed primary care doctor (assuming learning is his/her thing) and for us and includes an explanation of the differences between ILADS and IDSA care. I have met many Lyme patients who were damaged badly by IDSA members. They strongly advise avoiding infectious disease doctors, as a result. Most of them are uninformed (even though they think they are experts) and many thus base their treatment decisions on poor science that harms us.

...part 1 of 3

From the May 2007 issue of Clinical Advisor
Controversy continues to fuel the "Lyme War"
By Virginia Savely, RN, FNP-C

As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.

Controversy over the treatment of a particular disease is not uncommon. There are many illnesses for which there are different schools of thought and more than one treatment method-e.g., heart disease, prostate cancer, and breast cancer. When it comes to Lyme disease, a bacterial infection caused by the corkscrew-shaped spirochete, Borrelia burgdorferi, the battle lines are particularly distinct, and the opposing viewpoints reach vitriolic proportions, to the ultimate detriment of the patients.

Lyme disease, which is most commonly acquired through the bite of an infected tick, has been reported in every state and has become the most common vectorborne disease in the United States. In 2005, the CDC received reports of 23,305 cases, resulting in a national average of 7.9 cases for every 100,000 persons. In the 10 states where the infection is most common, the average was 31.6 cases for every 100,000 persons. The CDC estimates that the disease is grossly underreported, probably by a factor of 10.

Meet the players

The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties.

IDSA maintains that Lyme disease is relatively rare, overdiagnosed, difficult to contract, easy to diagnose through blood testing, and straightforward to treat (www.journals.uchicago.edu...40897.html . Accessed April 6, 2007). ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, especially when treatment is delayed because of commonly encountered diagnostic difficulties (www.ilads.org /guidelines. html. Accessed April 6, 2007).

Diagnosis: Where it all begins

If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. However, Lyme disease is often missed during its early stage when it could be most easily treated (Table 1).

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TABLE 1. Reasons for missed diagnosis of Lyme disease

* Patients often don't realize they have been bitten.

* Patients often don't have the characteristic and diagnostic Lyme "bulls-eye" rash.

* Clinicians are unaware of the widespread prevalence of the disease and do not include it in the differential diagnosis when they think it is not endemic to their area.

* The mild flulike symptoms of early Lyme disease are usually attributed to a common virus.

* Clinicians are not familiar with the varied signs and symptoms of the organism once it starts to disseminate throughout the body.

* Clinicians are unaware of the insensitivity of commercial Lyme tests and therefore are inclined to rule out the disease in the presence of a negative test.

* Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.

* The Lyme spirochete can enter a dormant state soon after the tick bite and reappear months to years later, causing symptoms that are not readily associated with the original bite.
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Since the deer tick is no larger than the period at the end of this sentence, it is not surprising that people frequently do not realize they've been bitten. In a hairy part of the body, the tick is almost impossible to see, and even when it is noticed, it is often mistaken for a mole or scab. When the tick latches on, it injects salivary components that anesthetize the area and decrease inflammation at the site of the bite, leaving the victim unaware of the tick's presence and allowing it to feast undisturbed.

The erythema migrans (EM) rash is commonly known as the "bull's-eye" rash for its characteristic shape. The CDC maintains that a patient presenting with a bull's-eye rash does not require testing for Lyme disease because the rash is diagnostic in its own right. However, the rash does not always present in the classic pattern of concentric, round, red circles. EMs can be oval in shape and/or solid in color, with shades of pink, purple, and red. The rash may or may not contain pustules, itch, feature a dark spot in the middle, or have a denuded center. The size varies from that of a quarter to 12 in or more. Some victims develop a diffuse rash over the entire body. EMs are commonly misdiagnosed as spider bites, cellulitis, or ringworm. To complicate matters further, as many as half the people who acquire Lyme disease from a tick bite develop no rash at all.

Frequently, a clinician mistakenly assumes that there are no Borrelia-carrying ticks in the patient's geographic area and fails to include the disease in the appropriate differential diagnosis. Lyme disease should be considered regardless of where a patient lives. Ticks are carried on numerous animals, including household pets, rodents, deer, and birds, so it is little wonder that Lyme disease-transmitting ticks are not confined to a few distinct geographic areas. A travel history should be obtained to determine whether the patient has recently traveled to a particularly Lyme-endemic area (the northeastern United States, north-central United States, and the Pacific coastal region).

Most clinicians are not familiar with the varied signs and symptoms of Lyme disease (Table 2), and this contributes to misdiagnosis (Table 3). Children may present differently than adults, with predominant symptoms being changes in behavior and school performance. In affected children, parents typically report mood swings, irritability, obsessive-compulsiv e behavior, and new-onset attention-deficit/ hyperactivity disorder. Physical symptoms in children may include fatigue, frequent headaches or stomachaches, urinary symptoms, and migratory musculoskeletal pains.

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Table 2. Symptoms of Lyme disease by system

MUSCULOSKELETAL
Joint pain, muscle pain and cramps, muscle joint stiffness, loss of muscle tone, back [ain and/or stiffness, neck pain and/or stiffness, heel and foot pain, temporomandibular joint syndrome

NEUROLOGIC
Neuropathies, paresthesias, dizziness, cognitive disturbances, attention deficit, Bell's palsy, tinnitus, restless legs syndrome, drooping eyelid, transient blurred vision, new-onset anxiety or panic attacks, clumsiness, depression, difficulty chewing or swallowing, hallucinations, headaches, involuntary jerking or muscle twitching, irritability, poor balance, sleep disturbances, speech difficulty, weakness of limbs, hyper-sensitivity to touch, sound, light, and smell

CARDIAC
Exhaustion, palpitations, shortness of breath, tachycardia, hypotension, hypertension, heart murmur, abnormal ECG, chest pain, or tightness

ENDOCRINE
Low body temperature, sweats and/or chills, irregular menses, loss of libido, worsening premenstrual syndrome, pelvic or testicular pain, milky breast discharge, hypertriglyceridemi a, Hashimoto's thyroiditis, weight gain

GI AND URINARY
Abdominal pain and tenderness, bloating and/or gas, constipation, loose stools, nausea, urinary frequency, constant thirst, irritable bladder, urine control problems, bowel control problems

OTHER
Easy bruising, hair loss, recurrent sinusitis, sore throats, tender glands, tooth pain, unusual rashes, shooting pains throughout the body
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TABLE 3. Diagnoses that should be suspect for Lyme disease

IN ADULTS
* Chronic Fatigue Syndrome
* Fibromyalgia
* Depression, anxiety, obsessive-compulsiv e disorder
* Somatization disorder
* Lupus
* Multiple Sclerosis
* Parkinson's disease
* Amyotrophic lateral sclerosis (Lou Gehrig's disease)
* Early-onset Alzheimer's disease
* Meniere's disease
* Viral syndrome

IN CHILDREN
* Failure to thrive
* Autism
* Attention-deficit/ hyperactivity disorder
* Learning disabilities
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continued....

[Sonsie]

...continued: part 2 of 3

When a patient presents with a collage of seemingly unrelated symptoms, there is a natural tendency to assume that a psychological component is at play. Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.

The testing conundrum

The CDC is aware of the insensitivity of the tests for Lyme disease and encourages clinicians to use judgment rather than a test result to make the diagnosis (www.cdc.gov/ncidod/dvbid/...diagnosis. htm. Accessed April 5, 2007). As previously mentioned, however, most clinicians do not feel confident in making this judgment call and continue to look to unreliable test results for confirmation of disease.

The Western blot test
Because B. burgdorferi is an extremely difficult bacterium to culture in the lab, testing has relied on detection of antibodies to the organism. The Lyme enzyme-linked immunosorbent assay (ELISA) gives a titer of total immunoglobulin (Ig) G and M antibodies and is currently the accepted initial screen for suspected disease. Since a screening test should have at least 90% sensitivity, the 65% sensitivity of the commercial Lyme ELISA should lead to its reconsideration as an acceptable screening tool.

The Western blot, which is commonly used as a confirmatory test for Lyme disease, is more sensitive than the ELISA. While the CDC has published strict criteria for positivity on the Western blot to make a more exclusive cohort for epidemiologic purposes, it never intended for these criteria to be used for diagnosis. Unfortunately, the restrictive criteria omit several of the important bands on the blot that are highly sensitive markers for the presence of B. burgdorferi (see "Interpreting the Western blot,"). Clinicians should become acquainted with the relative sensitivity and specificity of each of the bands on the blot to make an appropriate assessment for diagnostic purposes. A negative test based on epidemiologic criteria may be a positive test for diagnostic purposes.

Treatment dilemmas

The Lyme spirochete presents a formidable adversary. With more than 1,500 gene sequences, B. burgdorferi is genetically one of the most sophisticated bacteria ever studied. Treponema pallidum (the spirochete responsible for syphilis), for example, has 22 functioning genes whereas the Lyme disease spirochete has 132.

Borrelia burgdorferi' s stealth pathology makes eradication of the disseminated organism a near impossibility. Before the tick delivers its inoculum of spirochetes into the host, it injects a substance that inhibits the immune response, allowing the spirochete to gain a strong foothold. The spirochete itself secretes enzymes that help it to replicate and infect the host.

Once disseminated throughout the body, B. burgdorferi secludes itself and becomes difficult to detect through laboratory testing-and by the host's immune system. The bacterium may hide in its host's WBCs [white blood cells] or cloak itself with host proteins. Furthermore, it tends to hide in areas not usually under immune surveillance, such as scar tissue, the central nervous system, the eyes, and deep in joints and other tissues.

Phase and antigenic variations allow B. burgdorferi to change into pleomorphic forms to evade the immune system and antibiotics. The three known forms are the spiral shape that has a cell wall, the cell-wall-deficient form known as the "L-form" (named not for its shape but for Joseph Lister, the scientist who first identified these types of cells), and the dormant or latent cyst form. Encapsulating itself into the inactive cyst form enables the spirochete to hide undetected in the host for months, years, or decades until some form of immune suppression initiates a signal that it is safe for the cysts to open and the spirochetes to come forth and multiply.

Each of these forms is affected by different types of antibiotics. If an antibiotic targets the bacterium's cell wall, the spirochete will quickly morph into a cell-wall-deficient form or cyst form to evade the chemical enemy.

Borrelia burgdorferi has an in vitro replication cycle of about seven days, one of the longest of any known bacteria. Antibiotics are most effective during bacterial replication, so the more cycles during a treatment, the better. Since the life cycle of Streptococcus pyogenes (the bacterium that causes strep throat) is about eight hours, antibiotic treatment for a standard 10 days would cover 30 life cycles. To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks.

Within the tick gut are hundreds of different types of pathogens. How many infect humans is unknown. Some have been identified and are known to intensify morbidity and complicate treatment of Lyme disease. Awareness of three coinfecting genuses in particular -- Ehrlichi a, Bartonella, and Babesia -- has increased, and persistent infection with these organisms has been described. Testing for and treating these coinfections has become part of the approach for clinicians who specialize in the treatment of Lyme disease.

Treatment methods
IDSA guidelines recommend treating certain high-risk tick bites with a prophylactic single dose of doxycycline. This is recommended only if the tick is clearly a deer tick that was attached for 36 hours or more, the patient was in an endemic area, and if treatment can be started within 72 hours of the time the tick was removed. Most ILADS practitioners treat any high-risk tick bite with a full month of doxycycline.

If a patient presents with EM or has a positive Lyme test, IDSA guidelines recommend treating with either doxycycline, cefuroxime, oramoxicillin for 10-21 days. All other antibiotics are specifically not recommended. After the prescribed amount of time, treatment is discontinued whether symptoms remain or not. However, if symptoms remain severe after the patient has been off the antibiotics for a few months, treatment with another two to four weeks can be considered. One month of IV antibiotics is recommended for severe arthritis or neurologic disease.

IDSA stresses that persistent symptoms do not indicate chronic infection and that prescribing long-term antibiotics to patients unresponsive to the typical two- to four-week course is useless and potentially harmful. "There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease," the guidelines state. "Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (six months or longer) subjective symptoms after recommended treatment regimens for Lyme disease."

Patients who continue to suffer from persistent fatigue, pain, and cognitive disturbances after a traditional short course of antibiotics are rare, the IDSA panel claims. These patients have developed "post-Lyme syndrome," probably due to an immune system that cannot shut down after the infection is gone. This syndrome can only be treated with symptomatic care and tincture of time.

ILADS, on the other hand, promotes the idea that the Lyme spirochete is very hard to eradicate and persistent symptoms are due to ongoing infection. This organization' s approach is to treat with antibiotics as long as symptoms remain. Off-label combinations are often used based on clinical experience. Variable response to antibiotics and occasional antibiotic resistance are thought due to the fact that there are over 100 strains of B. burgdorferi in the United States and 300 strains worldwide.

Since the Lyme spirochete is adaptive and morphs to a new cell type when under stress, clinicians who advocate aggressive, long-term treatment support giving two or three different classes of antibiotics at the same time and changing the treatment protocol every two to three months. Higher-than- normal doses of antibiotics are given to achieve better penetration of both the tissue and the blood-brain barrier. IM injections of long-acting penicillin or IV administration of antibiotics are recommended for patients with neurologic disease. Precedent for the safety of long-term antibiotic use has shown that the benefits outweigh the risks.

According to ILADS, treatment is complicated by the frequent presence of coinfections, which can intensify symptoms and prolong treatment. Therefore, antibiotics that target the coinfections are usually prescribed prior to or along with those that treat Lyme disease. Table 4 lists treatment options used by ILADS clinicians to target the various forms of the B. burgdorferi bacterium, and Table 5 lists treatment options for the most common coinfections.

continued....

[Sonsie]

...continued: part 3 of 3


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TABLE 4. Lyme disease antibiotic treatment options

Doxycycline
Minocycline
Macrolide (clarithromycin, azithromycin) + beta lactam
Macrolide (clarithromycin, azithromycin) + metronidazole or tinidazole
Ketolide + beta lactam or metronidazole
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TABLE 5. Treatments for coninfections

Babesia (treat this first and for at least four months)
* Atovaquone + azithromycin
* Metronidazole + azithromycin
* Clindamycin + hydrochloroquine
* Lariam + doxycycline
Trends Parasitol. 2003;19:51-55 and Emerg Infect Dis. 2003;9:942-948

Bartonella
* Ciprofloxacin or levofloxacin (Levaquin)
* Clarithromycin + DS sulfa
* Rifampin + doxycycline
J Clin Microbiol. 2004;42:2799- 2801 and J Spiro Tick Diseases.
2002;9:23-25

Ehrlichia (many Lyme treatments will cover Ehrlichia too)
* Doxycycline
* More resistant cases, add rifampin
Lancet Infect Dis. 2001;1:21-28
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Occasionally, Jarisch-Herxheimer reactions complicate Lyme disease treatment. These symptom intensifications are due to elevated cytokines and toxins released during B. burgdorferi die-off. Many patients notice that symptoms occur cyclically (every 21-28 days). When these intensification reactions occur, the treatment can be temporarily worse than the disease.

It is difficult to decide when to stop treating Lyme disease since there is no test that demonstrates a cure. Because of the lack of simple culture techniques and the low sensitivity of antibody tests, a negative test does not rule out infection. Treatment cessation is based on symptom resolution, which means that symptoms may return if the infection has not been eradicated.

The road ahead
Rather than shy away from the complexities and controversies of Lyme disease, clinicians should welcome the chance to learn about this condition. Lyme disease is much more prevalent than most realize. Clinician education will reduce patient suffering and hopefully put an end to the "Lyme War."

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AT A GLANCE

* Lyme disease has been found in every state and should always be considered in the appropriate differential diagnosis.

* While a "bull's-eye" rash is diagnostic, fewer than 50% of patients develop any rash at all.

* Lyme patients should be tested for other tickborne organisms, such as Ehrlichia, Bartonella, and Babesia.

* Eradication of the Borrelia spirochete may require use of two to three simultaneous antibiotics for up to three years.
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Ms. Savely is the owner of TBD Medical Associates in San Francisco. She is a nurse practitioner who specializes in treatment of Lyme disease and other tickborne illnesses

[Erin]

You know Sonsie...I get the feeling that you only posted this because I mentioned that I'm going to be seeing an infectious disease doctor.

As I've said before, my choices here are limited. It's unfortunate that in a city of over 400,000 people that I cant find a Lyme specialist. You would think we'd have at least one here.

I'm not able to travel to another state to see a Lyme specialist right now. I simply do not have the money to drive 600 miles to another state. I drive, but not on the highway or interstate. (vision problem from last year. If I have to drive at night, it's really difficult) I've never even driven myself to my boyfriend's apartment 50 miles away. I've been seeing him for 3 years. He always comes and gets me.

My father works and cannot get the time off to drive me to another state. I'd ask my boyfriend, but he's in a similar situation...he cant get time off work to drive me either.

I'm feeling ever increasingly unwelcome here everytime I read a message from you. At least you're not sending me harrassing private emails like a few other people have.

I'm having to jump through the hoops that my insurance company is putting in front of me. I cant find a local doctor willing to draw blood to send to a lab in California (Igenex) I dont understand why they wont do the blood draw.

It's not that I dont want to see a Lyme specialist, it's that there is simply not one available to me at the moment. As soon as I'm able to get to a Lyme specialist (probably in another state) I'll do that, but right now it's a bit impossible.

[Ginny43]

Erin
Having lyme can just drive you to distraction. The facts are so hard to find because the "experts" disagree. In the meantime you're the one who is sick and are trying to match what you know from symptoms to what everyone is saying.

Sonsie and Blimeyitslymie are treasures at searching out information and making it available for us to read. They are good to share what they know and help us all. They are a blessing for those of us who are too fatigued to spend hours on the computer.

It takes a while to adjust to lyme. There aren't any easy answers. We all keep looking for hope in different ways. The longer you have the disease, the more you realize how much people here help - especially when we're discouraged.

I hope things work for you, but just be prepared for emotions to come and go. If not tomorrow, then maybe the next day, you'll feel better. For sure, becoming discouraged and blaming others is counter productive.

Praying for us all -- Ginny 43

[Erin]

I'm not blaming others...I'm just tired of people emailing me and telling me that I'm crazy or just calling me offensive names because I'm not seeing a LLMD. (and I have to mention that it's NOT Sonsie who is doing that, it's two other people)

and then I see a message about we should not be seeing an infectious disease doctor, right after I post a message that I'm going to be seeing an infectious disease doctor. Just because a few infectious disease doctors people have seen didnt know anything about Lyme doesnt mean that ALL infectious disease doctors now nothing about Lyme. I'm hoping the person I see will actually know something.

I've heard the suggestion that I see an LLMD, yes, I want to see an LLMD, I just cant find an LLMD in my area, and I cant travel to another town/state to get to an LLMD. It is just not possible for me to do that the way things are for me right now.

I was a wee bit offended by a comment Sonsie made in another thread. Inferring that I was stupid because I didnt find her posts "credible". I dont see how she thinks she knows my mind to come up with the idea that I didnt think seeing an LLMD as a "credible" suggestion.

I know I have to find an LLMD, but that's easier said than done if almost impossible here, so for the moment I'm hoping that the doctor that I'll be seeing next month will be knowledgable about Lyme and wont send me back out into street if I dont meet the CDC "criteria" for Lyme.

[Buttons2]

Erin, I understand what you are saying.....I left this forum for a time when I gave up on doctor's. I too felt that everyone fortunate enough to be in the care of a LLMD & taking expensive anti-biotics was pushing their agenda & ignoring the less fortunate.

This is a battle that will most likely never be resolved. We have to make decisions about our own health depending on our indiviual circumstances & resources.

Nobody else walks in our shoes!

I've used herbals,vitamins & even the salt/vitamin C regime.

There are Lyme sites I've never even registered on. I wouldn't feel welcome there,I've always been active on BT in other forums besides Lyme however.

I feel like an outcast from everyone that actually had a tick bite! I had a spider bite,I killed the spider so there is no doubt about this. Try to find info about Lyme & spiders though......I know some LLMD's have stated other bugs can pass Lyme & Bartonella,also mycoplasma,but the info is impossible to find.

Ticks & spiders are relatives!

One Lyme site has so many people with vast knowledge & scientific expertise that I feel like I'm visiting another planet-thus never even lurk there these days.

My eyes were my very first issue,but it wasn't until I began having horrific myoclonic jerks that I discovered Lyme disease existed. There are no LLMD's in WA state either. And I can no longer afford to travel out of state or country for help.

We all have to deal with our health issues in our own way. When people say you MUST see a LLMD & go into debt if you must.....I'm sure they mean well,but many,many of the people on Lyme forums are (in my opinion),totally clueless what it's like to be completely broke,unable to work (or even drive in my case),have no family support,no health insurance....yada,yada. They are looking on this issue from THEIR standpoint & will not budge an inch.

having said that, I also recognize your frustration. You bring out some very good points. I suggest you simply block PM's or emails from anyone pushing you & especially those that are insulting! that's the last thing you need! You probably get enough of that from relatives and people who you thought were your friends right?

This forum is supposed to be supportive emotionally & informative. But none of us should be judgmental or critical. I extend my apology to you for also beating the drum about infectious disease doctor's. I truly hope the new doctor can help you. I'm coming here with my own perspective & horrific experiences with doctor's over the past 9 years. My state of mind was so bad last fall that I actually gave up my health insurance! What sane person does that? I decided the stress was gonna kill me so why continue to seek help? I could write a book about what this spider did to me-basically stole my life! And in all these years I've only encountered one other person with Lyme from a spider bite!

I come here to learn,to provide what info I can,and hopefully to be supportive. My test was negative....I spent 6 weeks trying everything possible to get my test results....and I finally had to give up when all I received was a very bad copy of a test that merely said negative,no bands-nada. I was driving myself nuts trying to get the lab to cooperate,finally I gave up.

By the way,the spider bite is still visable on my foot! Last year it decided to remind me it was trouble,sent me to 2 different foot specialists,one scared me when he diagnosed it as a rare MALIGNANT tumor,the other did a 24 hr culture & said I needed a biopsy. Guess what? I'm still alive! I had put a sea salt poultice on the bite site & made it puff up full of a gooey substance (never admitted that to either of these doctors). I could probably do it again.

I imagine there are many people reading my posts that figure I don't really have Lyme but just the world's most strange spider bite. Well, guess what? I figure some others' might not have Lyme either but ??? This is not a disease 100% accurate in diagnosis-how could it be?

You've done a good job of defending yourself. Kudos to you for continuing to even post here! And best of luck to you....Buttons

[Sonsie]

I get the feeling that you only posted this because I mentioned that I'm going to be seeing an infectious disease doctor.
Puh-leeze. :) I posted this because it is a really excellent account of how ILADS and IDSA differ. I posted this because I want everyone who comes here to understand and be educated about the risks of seeing IDSA doctors. Mostly, I posted this now because I found out about it now.

I'm feeling ever increasingly unwelcome here everytime I read a message from you. At least you're not sending me harrassing private emails like a few other people have.
Erin, I am not interested in making you feel unwelcome. You are an important part of this group! You bring up excellent issues that we all struggle with. I will admit that several times I have been unhappy when I've gone out of my way to collect information for you, and you haven't even said "Thanks," whether you want to act on the information or not. Like you, I have limited time and energy, and like you, I like to be appreciated, not accused of being unkind, mean, insensitive, clueless, or whatever else you think about me as you read my posts. I'm human too.

For the record: I am not the type of person who finds private messages full of criticism helpful. When my time and energy allows, I do use private messages when a member wants an exchange that he/she doesn't wish to share with the board, however, just in case anyone wonders about that.

I freely admit to being one-sided about who should treat us. Always have. Why? Because I spent decades being misdiagnosed and mistreated. In essence, I lost the chance to live my life. I don't want another person to suffer through that, if I can help it -- all you get for it is a thinner bank account (if you even had one to start with) and late-stage Lyme. That's what happened to me. I am now getting better, in spite of the condition I was in when I finally got treatment. Thus no one can deny that my solution works.

That said, anyone here is welcome to believe I'm wrong. I can relate to this mentality, because it took me years (due to my cognitive deficits) to understand what Lyme disease is and why ILADS has solutions and IDSA doesn't. The truth is that now I know an awful lot about tick-borne diseases. I never post speculation, just facts (and my opinions, which I identify as opinion). When I don't post URLs that provide the full details, I often mention that readers are free to ask me to do so if they want to know more.

Please understand the following about me: Lyme disease killed my dad. Two family members I love the most have Lyme disease and cannot find doctors to treat them. Three others have Lyme disease and do have LLMDs. I have two relatives who are MDs -- one is an LLMD (not possible for me to be this person's patient, alas), and one is in IDSA. You can imagine that this dynamic is difficult -- each person is going to have to be disloyal to some of us if they take sides. (Not that I ask any of them to take sides, mind you -- but the Dr. IDSA doesn't hesitate to paint us as irrational, so people naturally tend to take sides. Most of them are secretly terrified that they have Bb in them, too, given that the rest of us do, and so they desperately want to believe that Dr. IDSA is right.)

I will continue to battle for the right solutions. They work, and everyone should know about them so that they can decide what they want to do. If that means you don't like some of my posts, or that you think I don't care about people who can't travel and don't have unlimited funds, that is your right. My opinion is that you are incorrect, of course. ;) Every person here who lets an IDSA member treat them is thwarting progress for all of us, and allowing his/her condition to be made worse over time. I've seen way too many horror stories to believe otherwise.

[blimeyitslymie]

Erin,

I hope you know how welcomed you are here. Please try not to personalize posts. We are all just regular folks who share an illness; and hopefully support and information. My feelings are: take what's helpful, leave the rest behind.

We have all been down the rocky road of Lyme. It is a crime to have an illness which has no definitive diagnositic tools nor agreed upon treatment protocols. It is a disease which could be cured if caught in the early stages, but for those of us who have suffered for years and even decades, can take almost as long to heal from.

To have an illness with practitioners who are so polarized on all the above adds insult to injury. The truth is that most doctors don't recognize Lyme, nor do they know how to properly treat it. They tend to either follow the guidelines established by the Infectious Disease Association, which are terribly conservative (in fact the IDSA does not believe that chronic or persistent Lyme exists). Those who are familiar with Lyme attend seminars and network with doctors who have successfully treated Lyme (these docs are sometimes called LLMD) and tend to follow ILADS guidelines. I have found that debate exists even exists between docs who are considered LLMDs on how to best treat the illness. This is nuts.

I have been ill for over 18 years. I have been misdiagnosed with illnesses ranging from non-specific muscular dystrophy (muscle wasting evidenced in a muscle biopsy, which was not tested for Lyme) to myofascial pain syndrome to chronic fatigue syndrome to hypochondria to depression. I have endured
treatments that were painful and unnecessary (like electric shock therapy when I was being treated at a respected Pain Center; they said that after the treatments my brain chemistry would alter and the muscle pain I was suffering from would relieve... NOT...just tremendous memory problems for months to come). I have taken more medications than my pharmacist has in stock. I was finally diagnosed with Lyme about a year and a half ago, not by an LLMD, but a wholistic doctor who thinks outside the box and is open to new information when he doesn't know something I guess you could say he has now become lyme literate which is what the acromym is all about.

In the meantime, my endocrine system and my immune system just about cease to work and I have to rely on medications to do what my body should do on it's own. I have cognitive issues, reactive arthritis, also known as infectious arthritis, and can't be treated with the usual medications because they are immune suppressive, and have a lot of other typical symptoms of folks with persistent, recurring Lyme.

Blah, blah, blah. All this is to say that no one has all the answers for this crummy illness. Most infectious disease docs, but not all, tend to follow the guidelines the IDSA has published, after all, that is the journal of their field. I think that the seasoned folks here just want to help the newer folks avoid some of the pitfalls they have experienced. It would be exciting and heart warming if the infectious disease doctor you're considering thinks outside the box.

I think the best route for people with Lyme to take is to find a doctor in any field of medicine, who is willing to think in a new way about a complicated illness. Many people have had great success working with naturopaths, homeopaths and acupuncturists. Many have used a combination of both traditional western medicine and eastern practices.

Most importantly ... try not to stress about the little things ... which is so hard to do when you feel like crap and can't get a straight answer. Anyone who is hassling you or sending inappropriate PM to you should be blocked and then reported immediately to the moderators.

I hope you find the answers you seek, and I sincerely hope you feel stronger and better with every passing day.

Blimey